The Boy Who Loved Too Much Read online

  “Where’s my present?” he asked. His tone wasn’t demanding, just intensely curious. He’d been asking about presents for weeks now. Ever since he could talk, in fact, he had asked endless frantic questions about the topics that preoccupied him. This birthday party was one; he’d been looking forward to it with great enthusiasm, but even joyful anticipation sent him into an anxious tailspin. Dr. Pober called it anticipatory anxiety, and it was one of the more debilitating behavioral symptoms of Williams. The endless questions could be annoying, especially to Gayle, who often fielded the same inquiry dozens of times a day, but for Eli it was merely an attempt to alleviate his anxiety. To keep his fixations from swirling endlessly in his head, he phrased them as questions and sent them out into the world. That just seemed to externalize the feedback loop, however. Gayle did her best to redirect his attention, but it was usually a lost cause.

  Jean, who knew the routine, let the rude greeting slide.

  “Hello, my Eli,” she said, bending to hug him.

  His dark hair was curlier than usual on this humid, unseasonably warm May afternoon. Jean plucked at the curls, which sprang back into place while he scanned the living room over her shoulder. On the hunt for presents, he barged on, charging past Jean, then past Mimi, who was whipping cream in the kitchen for the chocolate cake she made Eli every year for his birthday. He burst out the door to the back deck, where other relatives were setting out food and plastic utensils.

  A breeze ruffled the leaves of an old oak tree that shaded the deck, making the eighty-degree day comfortable. Feathery seedpods drifted onto a blue awning that sheltered a bowl of chips and taco dip on the picnic table. Eli darted around the deck, peeking under the table just in case any presents were hidden beneath the folds of the red tablecloth.

  After greeting her mother and Jean, Gayle followed Eli outside, where she began hanging a stack of brightly colored metallic curlicues he had picked out as party decorations. She taped them to the edge of the awning, where they twisted in the breeze, creating cascading spirals that momentarily diverted Eli from the search for presents.

  “Mom, can I twirl these?” he asked, pointing to what was left of the stack, but with his head turned to see those already spinning above him, out of reach.

  “Of course you can,” she said, hanging another. Eli selected a glittering green one and dangled it from his hand, blowing on it when the wind died down.

  “I hope it’s not raining,” he said soberly, putting his fear for the future into present tense.

  “What do you think will happen if it rains?” asked Aunt Jean, who had joined the group on the back deck. Accustomed to Eli’s favorite discussion topics—fans and floor scrubbers, vacuums and spinners—his relatives often tried to broaden his conversational horizons, even if only tangentially.

  “Those twirlies will get wet,” he said with a frown.

  Gayle’s uncle Chris appeared from the kitchen, bearing a plate of hot dogs, and fired up the gas grill. Chris, in his late fifties, was a former Coast Guard officer who now worked at the post office. While he waited for the hot dogs to cook, he helped himself to the taco dip and sat on the bench next to where Eli stood, still focused on the twirling spirals.

  “I’m getting dizzy with all these twirlies around,” Chris said.

  “I know!” Eli agreed, his eyes squinting almost closed from the width of his smile. “I love it!”

  * * *

  WITHOUT MIMI AND THE REST of her tight-knit family, Gayle didn’t know how she would have made it through the early years of single motherhood. This house was where she’d found refuge after her divorce: she and Eli had moved into the den and slept on a pullout couch for almost a year until she could get back on her feet. It had made a full house even more crowded—Gayle’s late grandmother was still living here then, along with Jean and Mimi, Chris and his wife Suzanne, plus their two kids, Jake and Emily—but Gayle had always felt comfortable and supported here. Eli loved seeing so many friendly faces together under one roof. He’d have traded the space and privacy of their own home to move back here in a heartbeat.

  He still saw Mimi almost daily, either here or at his house. A few years earlier, she had retired from a thirty-year career at the phone company to care for her ailing mother. But her mother died a short time after, and since then she’d spent her free time watching Eli after school and in the summer while Gayle worked.

  In addition to their strong physical resemblance, down to the dark hair that Mimi wore in a shoulder-length bob, Gayle and Mimi also had a degree of cautiousness in common. Mimi could be even more guarded than Gayle, and she was especially careful when it came to Eli’s safety. Motivated by the fear that he’d draw the wrong kind of attention, she was quicker to correct his behavior. And although she spoiled him as much as any grandmother would, cooking him his favorite foods and giving him the toys he couldn’t convince Gayle to buy, she could sometimes be stern. Eli had learned to read her face, and when her eyes stopped smiling behind her gold-rimmed glasses, he stopped smiling, too.

  It had taken Mimi longer than Gayle to come to terms with the extent of Eli’s disability. In truth, more than a decade after his diagnosis, Mimi still hadn’t fully come to terms with it. Working their way slowly through the stages of grief, Gayle remained in a protracted depression—not as overwhelming as it once was, but still a constant nagging presence. Mimi was entrenched somewhere near denial.

  “It’s harder for me, you know,” Mimi once told Gayle. “I have to grieve for my grandson’s troubles and my daughter’s.”

  “Oh, I know—you have it so much rougher than me,” Gayle said, half joking. “You have it twice as hard.”

  “That’s not what I meant,” Mimi said.

  Gayle knew what she was trying to say: Mimi wanted to take care of them both. But her impulse to take care took the form of wanting to fix Eli, to normalize him, something Gayle already knew was impossible.

  Although Mimi loved Eli deeply, she struggled to accept the ways in which he was different, or the fact that he always would be. Even as a twelve-year-old, Eli was so childlike that Mimi could believe his behavior was part of a phase he’d eventually outgrow. It was jarring for her to encounter adults with Williams, on the rare occasions that she did, and see in them Eli’s boundless exuberance and uninhibited friendliness.

  On one of these occasions, Mimi had accompanied Gayle to an event hosted by the Williams Syndrome Association and been shocked to see two people with Williams, both in their thirties, ordering drinks at the bar.

  “Do they let them drink?” Mimi whispered to Gayle.

  “Does who let them drink?” Gayle answered. “They’re adults. They can drink if they want to.”

  Mimi told Gayle about a woman with Williams she had met at the gathering, who was about Gayle’s age and wore a wedding ring.

  “See, I wondered if they had sex,” Mimi explained. “But then I met that woman, and she said she was married. I said, ‘For how long?’ And she said, ‘Seven blissful years.’ So I guess they must, right?”

  “Why would you wonder that?” Gayle said. “Like, even if they were in a relationship, you thought they wouldn’t have sex? Why not?”

  “I guess I didn’t think they knew how,” Mimi said, turning her palms up noncommittally.

  “Oh, I think they can figure it out,” Gayle said.

  “I wonder if they ever get pregnant?” Mimi asked.

  “Sure they can,” Gayle said. “Of course they can. They really shouldn’t, but it’s certainly possible.”

  Mimi shrugged. Unlike Gayle, she hadn’t researched the disorder endlessly, attended all the events, and joined the Facebook groups. She’d become aware of the symptoms as Eli expressed them or Gayle explained them, but she’d never probed as deeply into how the syndrome developed over time. She hadn’t spent the hours Gayle had mulling over what it would mean as Eli grew up. She knew he was unlikely to ever be truly independent, but she hadn’t thought much about the rites of adulthood that he might
or might not achieve: a job, a relationship, even a drink at a bar.

  * * *

  THE DOORBELL RANG AND ELI gasped, flapping his hands excitedly like an overwrought penguin. Aunt Jean patted his shoulder.

  “Relax,” she said.

  “But I want to see my presents!” he said breathlessly.

  Eli’s cousin Kylie emerged on the deck, sun-drenched and freckled, her wet hair slicked back into a ponytail. She had just come from a friend’s pool party, as she announced to her grandparents, who were already there; they were the ones who lived across the street. Marcia, following on her daughter’s heels, said wearily that she was surprised Kylie hadn’t blown off the family party entirely.

  “She’s always ditching us for something better,” Marcia said.

  It was hard not to be struck by the difference between the two twelve-year-olds. The gap between them had only widened as Marcia’s daughters—Kylie and her seven-year-old sister, Morgan—grew up on the standard track, hitting all the developmental milestones on cue, while Eli followed a different path.

  Kylie was a precocious twelve, with near-perfect report cards and a robust social life. While Eli was still invited to her birthday parties (and pool parties, and dance recitals), they were far different affairs from his own quiet, peerless celebrations. At hers, he was surrounded by her throng of friends, who were polite but tended to ignore him.

  He seemed unaware of their rejection, content with whatever attention he happened to get. Kylie herself went out of her way to acknowledge him. It was Gayle whose feelings were hurt. The older Eli got, the more apparent it was that he was tolerated, but not quite included, by other kids his age.

  His exclusion wasn’t motivated by cruelty as much as by the natural tendency behind friend selection—gravitating toward others like us—that the preteen population hones to a razor-sharp precision. Eli was not like the other kids. He wasn’t like his cousin. Despite having a family in common, they were about as far from each other on the social spectrum as two kids could be.

  Eli was so thrilled by Kylie’s arrival that he stopped blowing on his twirly and flashed her a wide smile. She wore an expression of practiced nonchalance and a hot-pink, glitter-monogrammed Abercrombie & Fitch T-shirt—a recent purchase from a trip to the mall with her friends.

  “Kylie, look!” he said, holding up the curling strip of paper that now dangled limply from his hand. “My twirly!”

  She walked over and hugged him, then eyed the decoration quizzically.

  “What’s this?” she asked.

  “It’s my twirly,” he repeated.

  “But it’s not twirling,” she said tentatively, clearly on unfamiliar conversational ground.

  Eli, looking crestfallen, contemplated this observation without responding.

  * * *

  AFTER THE MEAL, GAYLE’S COUSINS Jake and Emily—Chris’s kids, both in their early twenties—arrived after working late on the holiday. Like Gayle, Emily had an edgy aesthetic, with dark hair streaked electric blue and thick eyeliner applied in a cat-eye swoop. As soon as she opened the front door, Eli barreled toward her with open arms. She caught him and squeezed him tightly.

  “Where’s my present?” he asked, gasping from the force of the hug. Emily said she wasn’t ready to give it to him yet.

  “What is it? Is it a Dustbuster?” he asked.

  “What are you wishing for?” she asked.

  “I’m wishing for a Dustbuster,” he confirmed. “And a Hoover Platinum cordless stick vac.”

  Jake, as shy and quiet as Eli was outgoing and loud, played guitar in a local band. He invited Eli to every gig he played; Eli was his biggest fan. And the feeling was mutual. Jake and Emily had grown up around Eli and treated him like a little brother. They had driven long distances to accompany Gayle and Eli on Williams syndrome awareness walks and attend fund-raising events.

  Now they helped Chris gather kindling, acquiescing to Eli’s repeated entreaties for a “crackling fire,” although the evening was so warm that no one besides the birthday boy wanted one. Once the flames were lit, Eli stood at the deck rail, staring into the fire pit. He rocked back and forth on his heels, transfixed by the flames. “Is it crackling?” he called down.

  Even when the logs were fully engulfed, Eli stood apart, silently watching the fire flicker. The crackling was still not enough to satisfy his aural cravings. He begged Chris to add new logs.

  “You want to make it a bonfire,” Chris said.

  “Yeah!”

  “We’re going to be out here until midnight,” Chris sighed good-naturedly as he put another log on the pile.

  Chris was perhaps the strongest male figure in Eli’s life, dominated as it was by women. He humored Eli’s unusual requests without judgment, other than raising practical arguments against, say, building a fire on a very warm night—and then overriding his own objections. Very little that Eli did ever fazed him, from the tantrums to the wardrobe malfunctions that plagued the awkwardly sized preteen.

  One night, while Gayle and Eli were over for dinner, Eli accidentally split the seam of his pants from the crotch all the way down one leg. Chris never batted an eye. Neither did Eli. While Gayle hunted for safety pins, Eli strolled through the house with the loose swath of khaki flapping behind him like an obscene superhero cape, unmindful of the fact that he was exposing his camo-print boxer briefs to the world.

  “Good thing those are camouflaged, so we can’t see anything,” Chris quipped. Gayle appreciated her uncle’s dry wit and the soothing influence he had on Eli.

  But being around her family could be taxing, too. Her relatives approached Eli’s condition with varying degrees of avoidance. They tended not to talk openly about it, presumably driven by a polite desire not to probe too deeply or remind Gayle of her suffering. She would have preferred that they probe. It bothered her when they didn’t know the specifics of the disorder—especially if they didn’t seem to want to learn more. They rarely asked what she was going through or what challenges lay ahead for Eli. Gayle sometimes wondered if these questions hadn’t occurred to them or if they just thought it would be rude to bring them up.

  For a disorder whose hallmark was nonstop socializing, Williams had had the contradictory effect of isolating Gayle from the outside world, from former friends, and even from her family. Many of her old friends still got together even after becoming parents, but Gayle, who would never let a sitter watch her son and who didn’t feel comfortable letting Eli roam unsupervised with other kids while the grown-ups talked, had drifted out of touch.

  These days it was hard to remember who she was apart from Eli, or who she’d once been. She could see a reflection of her former self in her friend Marilyn, who still attended the rock shows and horror movie conventions Gayle had once frequented. While Gayle shuttled Eli to and from the pediatric cardiologist’s office or his special-needs soccer practice, Marilyn was more likely packing for her next adventure.

  Gayle felt a sort of nostalgia for this life, but not envy. She didn’t feel like she was missing out; there was simply no room in her world for this part of herself. Eli took up most of the space she had once devoted to her own interests. Her social circle, meanwhile, had shrunk to include only members of her family and the few friends she trusted most. But even among this select group, she sometimes felt like an outsider. If her friends and relatives didn’t quite get Eli, in some ways they understood her even less. When she talked to the people she once felt closest to, it seemed like they were speaking different languages.

  The only people who truly spoke her language were other parents of kids with Williams. Gayle was so motivated to seek their company that she traveled across the country to attend conventions hosted by the Williams Syndrome Association. She drove hours—to Boston one weekend, to New York another—just to have lunch with fellow Williams moms. She spent hours on the WSA Facebook page responding to other parents’ postings and sharing her own questions, struggles, and successes.

  The Facebook grou
p was a font of information: the combined wisdom of hundreds of families who had already been through what Gayle was going through at any moment. It was here, not in the cardiologist’s office, that Gayle got her best education on the progression of SVAS, the dangerous heart condition nearly universal to Williams. She had worried when Eli’s mild stenosis was downgraded to moderate, so she crowdsourced the group to find out whether that meant he was on a path that would inevitably lead to surgery. A few other mothers offered hope: their children had been diagnosed with moderate stenosis that improved without surgery. Luckily, the same thing happened to Eli. But Gayle also heard from parents whose stories didn’t end happily, so she knew that the condition could worsen at any time and that it sometimes proved fatal.

  As vital as the answers they supplied was the emotional support Gayle found in the Williams community. She once bragged to them about a doctor’s appointment at which Eli hadn’t hugged a single person in the waiting room. They immediately understood what a colossal victory it was. Another time, she joined in a venting session about people who bullied and mocked kids with special needs. Gayle shared an anecdote about a former coworker who had made offensive comments during a phone call she overheard one day.

  “I’m not eavesdropping, but a few key words jump out at me, like ‘the retards,’ ‘re-re bus,’ and ‘loser cruiser,’ accompanied by some snickering,” Gayle explained. “I wasn’t completely clear of the context, and it was a ‘private’ phone conversation he was having, so I didn’t know what to do. I knew I would be mad at myself if I didn’t speak up, so I did. I said, ‘I’m not sure if you are aware that I have a son with special needs, and I was very surprised to hear what I heard.’ Basically he tried to say his kids had been in some special classes for ADD and they called the bus that themselves, or some bullshit like that. In any event, he said, ‘I will keep your sensitivity in mind.’ What?? My ‘sensitivity’? Seriously—GRRR. But sometimes I end up feeling worse when I confront someone, mostly because I am not satisfied with their response. Anyone been in this situation?”